2010 National Marfan Awareness Week

Sunday, November 14th to Saturday, November 20th, 2010

Help increase awareness of Marfan syndrome, Loeys-Dietz Syndrome, ACTA2, Familial Aortic Aneurysms, Familial Ectopia Lentis, and other related disorders.  

Marfan Syndrome, known as the "Silent Killer" is a serious genetic disorder of the connective tissue affecting more than 1 in 5000 Canadians and can affect multiple body systems including the heart, eyes, skeleton, and lungs. The most serious complication arising from Marfan syndrome and related disorders is an enlarged/dilated aorta resulting in increased risk for aortic dissection and sudden death if undiagnosed or untreated. It is beleived that 1 in 2 people who have Marfan Syndrome, don't know they have the condition, making the Canadian Marfan Association's mission to increase awareness of paramount importance. 

National Marfan Awareness Week gives us all the opportunity to educate Canadians about these serious conditions and related disorders. This week brings together patients, families, and friends to help raise awareness within ourcommunities. Please help us make a difference. 

Holding an event on behalf of the CMA is a fun way for you to increase awareness, fundraise and get all your family and friends involved. You can increase awareness and raise funds by selling tickets to an event or allowing attendees to make donations at your event, or both; displaying coin canisters; or selling Awareness Wristbands. You’re not too young or too old, and no amount is too little!


Here are some ideas to help you get started:

  • Ask your employer and colleagues to donate proceeds to the CMA from casual/dress down day in Support of National Marfan Awareness Week
  • Create a giving page benefiting the CMA at CanadaHelps.com in honour of Marfan Awareness Week. Check out our member Bonnie Tsui-Lowe's giving page at: http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=5499
  • Participate in the coin canister program by displaying a CMA coin canister at your business or workplace. Contact the CMA today for a canister!
  • Basketball, hockey, or any sporting event
  • Walk, dance, or even a swim a thon!
  • Host a lunch, dinner, or even a brunch!
  • Host a costume party…it doesn’t have to be Halloween!
  • Have a wine or beer tasting party
  • Make a presentation at your, school or workplace’s health and safety meeting
  • Sell Marfan Awareness wristbands at your school, work, or in your community groups
  • Write an article in your local or school's newspaper
  • Make a presentation at your work or school

Be creative, have fun, and create your own event doing something you enjoy!

Contact the CMA today; We will provide you with:

Coin Canisters, Donation Slips, posters, balloons, and brochures for your event! If you are interested in selling Marfan Awareness Wristbands, contact us today to learn how! 

Don’t forget to send us your pictures and event summary for our next Newslinks issue.

Contact us at:  info@marfan.ca  or (905) 826-3223 or toll-free at 1 (866) 722-1722. 


Thank you for all your support and time and for helping the CMA to achieve its mission to increase awareness of Marfan syndrome!